Hello, my name is Matt. I am extremely desperate for answers as I simply do not want to live anymore in this condition. I have been suffering for years with something that I strongly believe was caused by continued use of inhaled corticosteroids (Azmacort asthma inhaler, and Fluticasone nose spray). I used these inhalers for about twenty years. 2 puffs of Azmacort every morning and every night for over 20 years.
From 1996 to 2007, I began to develop several health problems. These included severe neck pain, eye twitching, tremor, heartburn, aching teeth, vertigo attacks, peeling skin from my lips and inside my cheeks, a lower eyelid “cyst” that I had removed, an episode of thrush, depression, daily headaches, insomnia, and low energy.
In 2007, I took my inhalers and threw them out. I was trying to figure out if the inhalers were contributing to my health problems. Within months of discontinuing the use of the inhalers, a few of my symptoms went away, but most of them got worse and I developed more worsening problems- brain fog, crawling skin, constant eye pressure, a feeling of sand in my eyes under my eyelids, constant crying, strange pulling feelings in my eyes, cheeks forehead and scalp, muscle atrophy in my neck, face, and shoulders, withdrawl/hangover feelings, concentration/memory problems, suicidal tendencies.
I always assumed that the problems were caused by the inhalers and figured they would subside with time, and I still think that they may. I have always been optimistic for some reason that I am getting better, but the symptoms have still not gone away. It has been ten years now since I instantly quit the corticosteroids and like I said earlier, I am getting desperate. I have talked to dozens of doctors over the past ten years, and they ALL dismiss the idea that the inhalers caused my problem.
In fact, since my symptoms are all invisible, my MRIs are unremarkable, and my blood work is always in range, most of my doctors I am pretty sure think that I am crazy. Funny thing about that is that I have no reason to make up symptoms that I am suffering with. I have already distanced myself from all of my family and friends. I do not tell any of them how much I suffer, because it is so humiliating when people say that I am depressed, or need rest, or should cut down on stress.
In other words, nobody believes that I am truly sick. I am sure that if I killed myself tomorrow because of the pain, people would say that I was a lost soul, or lonely. I have trouble being around other people because I always feel like I need to cry and decompress. I had to resign from my teaching position because of my insomnia and lack of ability to concentrate. It was the one last thing that I loved. I tried to hang on as long as I could, but I felt that the pressure to be at work and perform well daily was not benefiting my health and probably harming it.
Anyway, here is where I stand right now–
I do seen an endocronologist. I found out years ago that my cortisol levels and most other hormones other than my testosterone are normal (my testosterone level was at 100 for God knows how long). I was shocked when I found that out. I was sure that my cortisol would be through the roof, but here is the thing– I NEVER had any blood tests done while I was taking the corticosteroids. Only years after discontinuing them.
In my opinion, my cortisol levels were elevated (or depressed) while I was on the steroids. I believe that the inhalers poisoned my body. 99% of my symptoms are in and around my mouth, neck, throat, head and eyes (right where the spray was going). I believe that my cortisol levels are normal now because I am no longer taking the inhalers and my body is making the correct amount. What happens, however, to all of the cortisol that was building up in my body if this was indeed happening?
I believe that my symptoms post-inhaler are due to my body trying to get back to normal. But ten years is a long time. I was sure that I would be better by now but I really dont know how long it takes to recover from what I did to my body with those corticosteroids. After all, I used Azmacort shortly after its inception and beyond the time that it was discontinued in the US, when I was ordering it online from the UK. There probably are not many if any people that used that inhaler as diligently and for as long as I did. I have always been thin my whole life, so I cannot say that I ever had a ton of fat on my body that would indicate Cushing’s.
In the past several years though, I have noticed that I am losing mass in my neck, face, and shoulders. My face is becoming more angular. The spot between my shoulders where a camels hump would be is becoming more and more concave. It seems like this is kind of the opposite or reverse of Cushing’s. Could this be because my body is trying to recover and slowly melting away the fat deposits on my face and neck?
Again, I am extremely desperate for answers and help. I look forward to being a part of this forum and eager to find out if anybody else out there has had a similar experience to what I have been going through. I have researched Cushing’s and other diseases for years. One thing I have never been able to find online is how long does it take to recover from Cushing’s. If I did, indeed, have Cushing’s, it would have been building up for nearly 20 years. What kind of recovery would be involved with unknowingly having Cushing’s for that long? I really need to find out if it is possible that I could still be recovering after 10 years off of the corticosteroids. I still have some faith, but that faith is definitely waning.
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Jul 31, 2017 @ 18:02:06
Matt,
Makes sense! Recoverying from Cushings myself. Truly, as a Christian, tested my faith like nothing has and at 55, I have had some hard times.
I am praying for you. I never respond or write on things, but felt a lot of understanding reading this and asking God to give you relief and answers!
Sep 09, 2017 @ 18:08:17
It’s terrible that you have to feel like you’re going through this alone. It would help to find a doctor that is really listening to your story and hopefully asking you the right questions. I’d suggest meeting with a naturopathic doctor if possible and see where that leads you. Mine was able to help me when other doctors were unable to. Good luck- don’t give up, there’s someone out there that will be able to give you answers and help you feel better. I went through YEARS of feeling awful and wondering what the point of living was, but I’m finally happy. Not perfect, but happy.
Sep 13, 2017 @ 22:29:13
MATT WOULDN’T HURT TO TEST AT NIGHT I AM CYCLICAL AND AFTER READING BLOGS FOUND CUSHIES WITH MY EXACT SYMPTOMS AND WALAH!!!!!! TESTING SALIVARY CORTISOL AT 11:00 PM AND MIDNIGHT WHEN I WAS FEELING GOOD NOT SUPER SOAR AND MY HIGHS BEGAN TO REGISTER.LIKE TRACEY I AM A CHRISTIAN AND LIKE TRACEY THIS DISEASE TEST MY FAITH EVERY DAY. I REFER TO THE FINDING DORIE MOVIE AS FINDING MY CUSHINGS DIAGNOSIS AND KEEP REPEATING JUST KEEP SWIMMING,JUST KEEP SWIMMING…
Mar 24, 2018 @ 20:02:13
Hi Matt
You do sound like a classic Cushing even if you have not been given a formal diagnosis. There are online support groups if you look for them. “Inspire” is one of them. For sand / gritty eyes I found that a quercetin supplement really helps. I am still undiagnosed despite the buffalo hump, thin skin, adrenal adenoma (right side) , weight gain, osteoporosis etc. Matt don’t take the “crazy” diagnosis from doctors or family personally. Until someone actually experiences the rollercoaster that is Cushing they are clueless. You are not crazy or stressed nor are you alone.
So this is how I cope.
Adrenasense is the product name but its basically an herb called Ashwaganda which calms down the cortisol surges and slows the anxiety down to a manageable level. Black tea also reduces your cortisol and you probably already realized that cortisol is the stress hoermine. I am in Canada and the brand I use is Lipton. Its a yellow box and is identified as black tea. 2 cups a day. When I started to drink this tea I actually started to reach a dream stage in sleeping. I had stopped dreaming. Chamomile tea reduces adrenaline which I drink in the morning just 1 cup is enough. I also take a prescription called propanalol which helps regulate my blood pressure and supposedly with anxiety but I never found it helped. The Adrenasense made the difference. The website “Livestrong” offers advice on what vitamins might benefit you. I take specific ones and I feel better.
As for Cushing reversal my tumor was growing around 2cm a year and I had 10 sessions of acupuncture two years ago and the tumor has not grown remaining at 5.35cm. I am also drinking 2 cups of Chaga tea every day (Cushing , tumour and Chaga tea) (look that one up). This is my fourth week and I am feeling better? Email me if you want.
May 01, 2020 @ 00:58:11
Whatever the origin of your problems, it appears they have caused imbalance and have burdened you a lot psychologically.
Much lesser troubles cause the people to suffer.
Depression is usually the result, with brain fog and despair, but can be cured. Depression is not something that one should be ashamed of.
Visit a good psychiatrist who is also a psychotherapist, talk freely to him, trust him and take the medicine (usually brands like cipralex etc plus any other medicine or vitamin the doctor may prescribe) for 6 -12 months.
You will start feeling better in 3 weeks and in two months you will have your life back in your hands. By the time your treatment is over, you will be asking yourself why you did not go to the psychiatrist earlier…
Sep 27, 2020 @ 11:00:11
By the way, I know these symptoms very well. Ever heard of chiari malformation? This can also be responsible for your endocrine trouble. Talk to an neurologist and try to get an mri of your skull done.
Best regards
Vincent